Verfasst von: melscholz | 22. Mai 2013

Day +365 (a new „birthday“)

Getting out of MS?

Funny how my wording has changed:

More and more I say  „I had MS“ and less and less „I have MS“.

The word „thankful“ has been running through my mind often again. It ws my own decision to do HSCT, of course (after researching the subject and informing myself thoroughly) but if it hadn’t been for the support that I was given by so many people, in so many ways -before, during and after my stay in Tel Aviv, I wouldn’t have been able to do it. Thank you!

I am (almost 100%) convinved in the meantime, that my MS has been stopped. Improvements are noticeable (most of which I listed my last blog entry). Maybe not the giant steps tat I had secretly hoped for. But even baby steps are huge successes and more is certain to come. The regeneration of damaged nerves takes time and repair can go on for years. The most important thing was to stop the progression. That goal has been achieved and I am drug-free. My guess is that I would have been using a wheelchair fairly often by now in spite of taking the best disease modifying drugs available if I hadn’t done HSCT.

During the course of the past year, doubt, frustration and impatience caught up with me often. Those negative emotions are finally giving way to joy and relief and confidence. There is also a growing acceptance of the permanent damage that MS has left me with.

After HSCT, it is to natural wish for the body to recover quickly and regain the strength that it had before. But that doesn’t happen. It took me easily 3-4 months to get back to where I was physically before HSCT. Physical therapy, exercise, good friends, patience and concentrating on other things were and are the  best medicine to combat the „doubt virus“.

„My“ MS is fading more and more from my consciousness and the future shines bright again. I’m finally working again, part-time, my own little business, which is flexible and run from home. (www.fehlerengel.com)

Although MS plays a smaller role in my daily life, it’s very important to me to increase awareness of HSCT and to support and inform people who are at the beginning of their own HSCT journey. People who are interested often get in touch with me through this blog or via e mail. Keep it up!

HSCT for MS (and for other auto-immune diseases) awarenss is advancing. In Norway, a strong woman, who had HSCT in Sweden in August 2011, has „crusaded“ and achieved that HSCT for MS is now recognized in Norway and the state health insurance covers HSCT for cases of agressive, quickly progressing MS. In other parts of the world, awareness of HSCT for MS is growing and new studies reflect the effectiveness and growing experience with safety/tolerance and cost effectiveness in comparison to standard medication treatments.

There are excellent clinics for allogenic and autologous HSCT in Germany, which would make a terrific starting point for HSCT for MS. However, they are very hesitant due to the lack of experience, uncertainty of effectivess and concern for risks and complications.

Decreasing quality of life is a factor in MS that most doctors forget to take into consideration and which, in my opinion, is a major reason why people with MS are willing to go through HSCT to stop their disease.

If you have MS, talk with doctors and/or clinics about HSCT for autoimmune diseases. Try to get more doctors and clinics to look at and discuss the subject. Don’t be too disappointed if you run into scepticism and rather reserved reactions. Keep looking for other ways of reaching your goal.

George Goss’s blog is a practically inexhaustible source of information regarding HSCT and provides tons of links to studies and other literature pertaing to HSCT. http://www.themscure.blogspot.com

The Facebook group continues to grow by leaps and bounds -formed last February with 20 members, now over 750. An excellent forum in which to as questions and learn more about HSCT firsthand.

“Hematopoietic Stem Cell Transplantation for MS and autoimmune diseases”

https://www.facebook.com/groups/149103351840242/?ref=ts&fref=ts # / groups/149103351840242 /

In closing, thanks again to everyone, who has helped me on this journey.

… the future shines bright again…

cb and snoop

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Responses

  1. Dear Melissa,

    Your strong positive attitude will give you and others the strength to overcome and defeat MS. I congratulate on your courage that will sustain you as your body repairs itself.

    Have a wonderful summer with your family and friends.

    Love,

    Lee Schindel

    Sent by Lee Schindel from my iPad

  2. Thanks for such a positive boost!


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